Update from Lyn

[Lyn]

Well, hi everyone, I ended up at the Doctors, mine wasn't on at time, I was feeling as bad as when I was in heart failure, some of my problems were, I had Oral Thrush, infection in a cut finger, glad I didn't go ahead with the heart fluid biopsy, echo again of April 12, I keep falling over and I can't get up on my own, some chairs I can't get out of either, Dr said thrush from antibiotics I was on before. I read up on the Dexamethasone and it said that too much causes oral thrush, weakness in arms and legs, and trouble getting off some chairs and toilets, so I said to myself that is it, I cut back from the 4 a day to one a day, thinking this would do the trick, so when I went for treatment today I saw
my onc, of all things I was in a wheel chair, or my Ron has to walk beside me hanging onto the back of my clothes. Anyway he did some reflex actions on my limbs and has ordered a MRI of my head and spine, I know everyone is thinking the worst, he mentioned I wasn't as sharp to speak to last time, all I know is that I am very very depressed and seem to spend a lot of time either sleeping or trying to get up and not ready to face the world in a wheel chair. Then when you break it all down, my bloods are all ok, my bloo pressure is constantly low, 95/50 today, I am on Morphine 20mg twice a day, dexamethason 4mg 1 a day, Valium 10mg to sleep for 3-4 hours, my anti-depressant Dothep for nerve pain caused fibroymyalgia and my facial atrophy, forget the name for that one, but there is one, Neurontin 1200 mg day nerve blocker, Dilatrend 65mg to lower blood pressure, thyroid tablets, Ramapril and Digoxin for heart rythem, Lipitor for cholestoral, OH a multi vitamin for over 50, fish oil, and glucosamine, then we have Hercepitn/Gemzar/Taxol/Zometa, I think that just about covers it, why wouldn't I be a bit dull, I am on Uppers, Downers Sideways, and my personality well what do they expect. I do know that this morning because I was having treatment, to start off I didn't take the Decs, so I ended up with a killer lower back ache, I took 2 heavy duty pain killers, 2mg liquid Ordine and relented and took the Decs and left it out of the drip, I was trying to remember what pain I was actually treating, and it was my shoulder which had chipped again when I fell on my holiday, so rang to book MRI, and of course computer down so waiting for a call back, so I guess I do need to worry, any words of encouragement if it has gotten into the spine because at the moment I am not being very bright and cheerful, I am used to just being independent and getting in the car and driving, so the computer is OK at the moment and I am still at times running on speed, up all night doing house work and developed a compulsive obsessive disorder with the dec, that is the bit I don't mind because I can actually see what I have done, everyone says I should rest, problem is I believe if I stop using it I will loose it, and end up on the couch as a potatoe. My onc did ask if I had any new numbness I couldn't think, then I realised I get in the shower and find cuts and bruises I didn't even know I got, so I guess there is to some degree. Well I am still trying to raise a smile out of this, but then I look in the mirror and see a Cabbage Patch Doll image of me, and that is frightening, but my Ron loves me undconditionally and treats me like a china doll any way, oh and I do have a good appetite, so this is one of my tougher phases I have to work through., AND YES I DO KNOW I WON'T BE DOING IT MY OWN, MY TRULY WONDERFUL FORUM FAMILY HERE WILL BE HOLDING MY HAND WITH GENUINE LOVE PRAYERS AND COMFORT.

LOVE AND HUGS LYN

[mts]

Oh My! Lyn, Honey!

I read your posts and I get a smorgasbord of feelings... words are just too difficult to express... I want to make you some yummy, cheesy lasagna so at least your taste buds can get some enjoyment for now. I know however, you have the will of all of us combined and you will pull through this!

Please know you are in my prayers.

Warmly,

Maria

[Lyn]

Thanks Maria, Lasagna sounds real good to me, I even like the vegetable versions, I am burning off calories with the steroid so I couldn't care less about weight at the moment, just have to do what makes me feel good and food is one of them, junk shop, shopping is next, but have to hold off on any shopping at the moment.


Love Hugs Lyn

[tousled1]

Lyn,

I noticed that you are taking 1200 mg of neurontin. May I ask how long you have been taking it. I had cervical and lumbar spinal fusion and was on neurontin for a few years. I told the doctor that the neurontin made me "stupid" and he just did nothing but increase the dosage until I was up to 1200mg a day. I started to have tremors, forgetfullness, weakness in all my extremities, etc. My neurosurgeon finally sent me to a neurologist who took me off the neurontin -- and low and behold I was back to normal. The neurontin helped with the neuropathy that I have but I rather put up with the pain from that than feel that I was losing control of my being. I don't know if this is contributing to your problems or not but just thought I'd let you know how it affected me. Also, my oncologist wanted to put me on neurontin for some problems I'm having and I flat out refused -- I told her about the problems I had with in the past. My thoughts and prayers are with you.

[Lolly]

Dear Lyn, I just want to send you a BIG HUG, so here goes.....((((((( BIG HUG )))))))
Boy, talk about a drug coctail, you're a real connoiseur! And as we've all come to expect from you, still the Living Legend.
I sending you lots of love and will be hoping to hear good news on the MRI.
<3 Lolly

[StephN]

Dearest Lyn -
Good to hear from you, but NOT that you are in a wheelchair.
You know how some of us are worry warts and far be it for us to make any suggestions - BUT...
You stated that your blood pressure is 95 over 50 and You take "Dilatrend 65mg to lower blood pressure."
With that kind of low blood pressure your circulation must be sluggish and I can't understand WHY they keep you on something to LOWER your blood pressure. That is the drug I would question first.
You need LOTS to liquids - I doubled my water intake when I was on Dex, the Steroid from Hell - but maybe you are shy about the liquid intake due to the fluid around your heart??
You are a complex case, but remind me a little of my late Mother-in-law who would go back to France and get put on SO many drugs that she would feel just awful when she got back here. We had to cut several and she would feel better.
Also when you cut your Dex too quickly you WILL get PAIN. There is a proscribed weaning schedule that you will feel a LOT better if you use. Dropping from 16 to 4 mg in one day may give you some problems. I had terrible pains in my legs - excruciating actually - and was trying to follow their schedule!
All best wishes for a good scan, MRI and whatever else. Just give that new group of cancer drugs some time and space to win the joust.

[Barbara H.]

Hi Lyn,
I don't know what to say. You are one strong women! I'm glad you continue to post for encouragement and I hope we can give you some. Your post sounds as if your intellect is pretty intact to me. You are on a lot of drugs, and I do agree with what others have said. It may help to reduce some of them. I know how this disease can get you down; I've been there these past few weeks, just because I was a baby about having to add chemo. You are a fighter, a model, and have a lot left in you to to continue. I'm hoping that your MRI will be OK.
Best wishes and again my thoughts are with you.
Barbara H.

[TriciaK]

Dear Lyn, We are all hurting for you! I don't have any answers but like the others have said, it sure seems like you are on a lot of STUFF! Someone told me once that if you have doubts about all your prescriptions to take them in a bag or box to a pharmacist you trust and have him look them all over. Sometimes the pharmacists can figure out better than the doctor what meds interact. It sounds like you have gotten some good ideas from this website to challenge your oncologist with. I have read that thrush is like candida, due to too much acid causing food. Can you eat fresh veggies and a little fruit and avoid meat, dairy, white flour, processed foods and sugar? That may help. Please let us know how your next doctor visit goes. Blessings on Ron for being so wonderful! And yes, we are all here praying and cheering you on. Hugs, Tricia

[lindaw]

Dear Lyn
I am sorry you have to go through so much - how you keep your sense of humour is wonderful. I must say I can feel the lynne we know in your emails.I hope the drug and mri issue gets sorted soon. Once I know what to do I find it so much better - but not the wondering and waiting.

love
Linda.

[Sandy H]

Oh Lyn, thanks for the update and I know it must be a struggle for you to post. As several others have said that is a lot of medication. Steph does have a a good point with the blood pressure medication. Maybe, you should ask about that one for sure and the neurotin. Sounds like it could be from so many meds. I would never get out of bed with all of those. Wishing you well with the MRI results. Are you getting all your meds from one doctor or several? Maybe, you should list them all and show them to your doctor. Some times I wonder if the doctors realize just how many meds their patients are on if they are seeing more then one doctor which many of us do. God bless you for your courage to keep going and for Ron to be there by your side. We all need angels but not everyone has them. hugs, Sandy

[Lolly]

I would like to put in my 2 cents regarding the blood pressure meds; my dad had quintuple bypass surgery last fall, and of course was put on meds to keep his blood pressure low afterwards. After several months of him feeling, as he put it, "tired, tired, tired!", having dizzy spells and actually stumbling and falling several times, the cardiologist stopped his blood pressure meds. Low and behold, he improved almost immediately and now has perfect blood pressure. Again, just my 2 cents to illustrate that we are sometimes "over-medicated".
Lyn, I think Sandy's suggestion is a good one, take a list of all your medications to your doctor and go over them one by one. Make sure Ron or someone is there to take notes!

<3 Lolly

[Sheila]

Lyn
Just reading your list of meds is making me tired...are these all prescribed by the same Dr.? Some of us are on different meds from different docs and the left hand hand doesn't know what the right hand is doing.
Take Lollys advice, gather your list of meds anda good listener and head to the Dr.'s office.....it sounds as though you are being way over medicated Lyn....Please let us know how you make out....you are our hero you know!

[lu ann]

Hi Lyn, I havn't been on board for a few days and was wondering how you have been. I'm glad to hear from you, but feel sad that you continue to go through hell. It just isn't fair. I continue to pray for you and everyone on this board. Blessings and Love from Lu Ann.

[Lyn]

Hi everyone, and thanks again for all your love and support. I have been on the Neurontin for quite some time and it has been doing its job without any side effects. I am having another echo this week so will find out how LV is going. All of the doctors know what drugs I am on, they just shrug and tell me it is a miracle that I am still alive, us HER2's are a unknown quantity. Our docs and pharmacy have a program on their computer system where they keep a record of all our meds and when we add it will come up with a warning if their is a drug not compatible. My combination seems to be the only way I can function, or malfunction I should say. But one thing I am going to make sure my onc knows is that under no circumstances should he stop drugs, mine being the eostrogen blocker so the cancer can grow and the chemo can kill it, I can't believe that I actually agreed to it, we didn't expect this one to happen, if I hadn't kept complaining about my shoulder we wouldn't have found it, and the chemo I was on wouldn't have treated it anyway, so as soon as I get the result I will let you all know, and we can kick this one to the kerb as well.


Love & Hugs Lyn

Lyn, you're a real fighter. I truly admire you. You're in my heart and my thoughts during this time. Keep on fighting and winning through!

love and hugs
Sue

[chrislmelb]

Lyn, you truely are a living legend. Keep up the good work

Christine

[emmasmom]

Lyn you are truly an inspiration to some many of us on this board. Thank you. I will keep sending you positive thoughts and prayers.

[Kim in CA]

Dear Lyn,

I'm sorry you are having to deal with so much these days. I just wanted to let you know that I think of you everyday and keep you and all the other Her2 troopers in my prayers.

Love and Hugs, Kim